Smelly Danielly
20. 03. 2015

At some point in the middle of February, Matteo, who normally accepted his fate of having a CPAP filled night, started to fight me when it came time to put on his mask. I basically had the whole process down to a science and knew exactly what to do and when to do it. I was the only person who could get it on even after his nurse Karen had several failed attempts. I had the magic touch.

So when the night came that no matter what I did, Matteo would not let me put him on CPAP, I had no idea what to do. None of my tactics where working. The second I opened his door, or grabbed the mask he would wake up crying, curl into a ball, and wouldn’t let me near his face. I tried and I tried and I tried but nothing worked. We finally decided to just let him be and gave him a night off of CPAP.

Matteo had never spend a night totally CPAP free. Yes there were a handful of nights where he got as little as 2 hours but at least he got 2 hours.

The next night came and again I tried and again the same story. Screaming, thrashing, curling up into a ball. He was having none of it.

Ok, so two nights with out CPAP.

By the third night I was starting to panic. Not because he was having issues breathing and I was worried for his health but because I was worried the doctors would be mad at me for not being able to get it on. Yes, I am still 12 and scared of authority.

The next morning I decided to phone the hospital and find out what I should do. Given that it was a weekend all I could do was leave a message and continue to try what I had been trying.

Truth be told, while Matteo did have a slight increased work of breathing during the day, he really was handling no support at night very well. And really, he had been on some sort of breathing support his entire life, so it made sense that his body would struggle a little bit while it figured out how to deal with no more support.

A week into the whole ordeal I finally heard back from the hospital. I told them what was going on and how we thought it had to do with teething but no matter what we did, we could not get it on. They asked how he was managing without it and we said fairly well, so they decided to move up his sleep study so they could confirm he really was doing well at night.

Since Matteo decided that him and cpap were no longer BFFs, respirology decided to move up his sleep study to determine if we could say good-bye to cpap for good. Tonight is night one of two. Lets hope all goes well. #365photochallenge #cpap #sleepingbaby

The plan for the sleep study was to do it at Children’s Hospital in the ICU for 2 nights. Chad was scheduled to take a course out in Chilliwack so it would just be Matteo and I. Long story short, our first night was less than ideal. I kind of assumed that if they were going to do a sleep study on Matteo, they would, you know, want him to sleep and would therefore put him in a spot that would allow him to do so. Not so much. We were in the “quieter” part of the ICU, but still with the general population. There were lights and beeps and noises and all the things one would expect to find in an ICU situation. Matteo thought it was great and wanted to explore and look at every single thing. It took me FOREVER to finally get him to sleep only for him to sleep for 3 hours, then wake up ready to party. It then took another 3 hours to finally get him back to sleep for which he slept another 3 hours. I was set up in a cot next to him and got a grand total of 3 hours sleep.

The whole experience was a nightmare. I mean, obviously we were lucky because Matteo was just there to sleep and not there because he was sick, but in terms of a sleep study there was very little sleep happening.

The only saving grace to the whole night was that Matteo did not have one “episode” and his oxygen saturation was perfect (or as perfect as Matteo usually gets). The doctors were so impressed that they sent us home with out having to do a second night (thank GOD!) and told us that Matteo did not have to use CPAP unless he really looked like he needed it and they would call us to see us in a month.

The worst possible night for the best possible outcome! I think I was more excited that I didn’t have to sleep at the hospital again than I was about no more CPAP!

Being able to put Matteo to bed with out having to hook him up to machines and worry about numbers and this and that is amazing. It’s also been great having the opportunity to sleep through the night! Matteo was always waking up at least once and I just knew that it had to do with his CPAP machine waking him up. I had a feeling that as soon as we got rid of it, he would sleep wonderfully through the night. Low and behold, that is exactly what happened.

In true Matteo fashion, he lets us know when he is ready to do things. He didn’t want to wait until May to get off CPAP. He wanted off now!

Today is bittersweet. Karen, Matteo's nurse, is working her last shift. We are happy Matteo is doing so well that he doesn't need nursing support anymore, but we are so sad that we have to say goodbye. Karen has been with us for almost a year and her help

Now, the one bonus to having CPAP (if there is such a thing) is having the support of at home nurses. Matteo’s nurse Karen, has been with us from the beginning and has basically become a part of the family. Now of course there are rules and nurses and families aren’t suppose to get attached but seriously how do you not become attached to someone who is in your hours for 20+ hours a week looking after your child.

I knew that as soon as CPAP was no longer needed Karen would no longer be “needed” but we were lucky enough to get a few bonus weeks before the program was cancelled. Last night was Karen’s last shift with us and it was a sad one. Matteo loves playing with her and I love the company. Not to mention that because of her I was able have breaks and not always worry about putting Matteo on CPAP. There is something exciting about the idea of Matteo no longer needing all of this outside help, but at the same time it’s so hard to say good-bye to someone who has become so much a part of your life. Karen is truly going to be missed, but since she does live in the neighbourhood, maybe we’ll run into her every so often ;)

Words can not describe how much stress has been lifted from our shoulders now that Matteo is no longer on CPAP. Now we get to start a whole new chapter, CPAP free.

13. 03. 2015

I was going to do a pre-op post but someone didn’t nap as long as I anticipated him napping for so here I am doing a post-op post.

This was probably the first surgery I’ve had where I wasn’t totally stressed out and scared of what was going to happen. I guess I’m like a surgery pro now, or something like that.

Surgery day didn’t just involve surgery, it also involved a procedure where a metal coat hanger was rammed into my boob. Ok, well maybe not exactly like that, but pretty close.

We got to the hospital early and were processed right away, but I ended up having to wait forever at Medical Imaging for the whole metal coat hanger procedure. They were late in getting me and then the procedure was a gong show which made me late for my surgery.

When I had my biopsy for the calcium deposit (or “calc” as every medial professional likes to say) they placed a metal clip near the area to act as a “beacon in the night” so if I had to have surgery, they would know where to go. So the plan was to have an ultrasound tech find said clip then a radiologist would come in and place a metal wire right beside it so my surgeon could follow the bread crumb trail to the spot. A great plan in theory, not a great plan in practice.

First the ultrasound tech kept talking about my lump and not my “calc”, and I was like, seriously, have you not read my file? Today is not about lumps, it is about calcium! Then she couldn’t find the clip with the ultrasound machine and was generally confused by everything which was not reassuring. She finally decided she was going to go talk to the radiologist and see what he thought about the whole thing. The decision was then made that they would do this procedure using mammograms which meant they would be able to see the clip much easier but they had a higher chance of not placing the wire correctly on the first try.

Here is the thing about Burnaby General Hospital, they still have a mammogram machine that uses film. This means that instead of the imagine being instantly transported to a computer screen, they have to develop the film after every picture. So here’s how it went…

Two pictures get taken so they can figure out where this clip is. They figure it out and then clamp me in and leave me there for 5 minutes while they figure their lives out (the squished boob wasn’t as annoying as the extreme neck and shoulder pain I had while sitting in the most awkward position of my life). Then the radiologist comes in and based on all these pictures freezes the area and jabs me with this giant needle that has a wire sticking out of it. Then they take another picture to see if its in the right spot. I sit and wait while all this film gets developed. They come back and tell me it’s not in the right spot, so without taking it all the way out, he tries to re-position it. Another set a pictures get taken and I wait. This happened 6 times. 6 freaking times. Finally it was close enough that they could leave it where it was and I could have my surgery.

I guess the good thing about being late for surgery is they process you like a hot damn. No waiting around, no getting anxious, you are on the fast track to the OR!

When I met with the anesthesiologist I told her that I get super sick after surgery so she said she was going to give me all the good drugs. My OR nursers where young and spunky, which was fun and the surgery resident who was there works with our friend Nori, so it was like I had someone working on the inside for me. As odd as it may sound, it was probably the most pleasant operating room experience I’ve ever had. Like 1000 times better than my Thyroid surgeries.

When I woke up in recover I was so tired, but I thought my bladder was going to burst from all the fluid they pumped into me so I forced myself to wake up so I tell the nurse how badly I had to pee. It was odd to wake up feeling virtually no pain, no nausea, but having to pee like I’ve never had to pee before.

They wheeled me back to the day surgery room and after getting a once over I was finally allowed to pee. My pain started to get slightly worse so the nurse gave me a shot of morphine in the arm which hurt 1000 times more then the actual surgery did. I don’t understand why, if I have an IV, they always have to shoot me in the arm with the damn morphine. It is so painful.

Shortly after all this Chad arrived to pick me up and I got to go home. I really didn’t feel too bad other then being ravenous and super tired.

I’m still all bandaged up so I don’t know how monstrous this new scar of mine is going to be. I have a follow up appointment with my doctor next week and hopefully there won’t be any surprises there. For now I will sleep and watch TV and be glad this part is over.

03. 03. 2015

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You don’t really realize how bad your sons mullet is until you look back at pictures and think, “why did I wait so long?”.

Had Matteo’s hair naturally been curly or wavy or adorably long I probably would have left it, but it wasn’t any of those things. It was stereo-typically “I was born in Surrey and I drink Budwiser out back sittin’ on my pick-up”. I waited it out as long as I could but eventually it got to be too much and I caved to the peer-pressure. Looking back on it, I’m glad I did because seriously, his hair was ridiculous.

Thankfully we were able to get his hair cut at my mother house (thank you Marlee for coming over!) and were able to play his favourite nursery rhyme video. He didn’t move a muscle, until the end when Marlee was trying to trim his bangs and got in the way of him viewing his show (how dare she!).

Now he looks so much better. So much more adorable with out that party in the back.

Bye bye forever, Mr. Mullet!

As with everything else that happened in 2013, Matteo experienced a lot of “firsts” while still in the hospital. This year we were very excited to have Matteo experience the pure joy and madness that is Christmas at home!

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The morning started out with the tradition breakfast at Casa Ciavarro.

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I found this adorable hand-me-down outfit in Matteo’s closet on Christmas eve. Good timing!

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Note the family resemblance.

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Present madness!

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Someone was super pumped for Grandma and Grandpa’s gift. Three months later and Papa STILL hasn’t put it together. Srsly.

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TOYS

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After breakfast we went home to open up more stockings and presents.

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I basically dress Matteo is outfits that I would wear if I were a boy. So essentially we wear the same thing all the time.

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I can not tell you how many times I have looked into the living room to see some variation of this exact scene.

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Final stop of the day, stimulation overload at Nonna’s house!

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Sitting in his new Old Man chair.

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Our annual family portrait now with more baby.

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Puppies waiting for scraps.

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Spoiled again!

Christmas is so fun with kids. I’m looking forward to next year when Matteo will be more aware of everything. It only gets better from here!

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I started making Matteo’s birthday decorations a few weeks in advance of his birthday as I knew things would be pretty hectic the closer we got to the big day. I didn’t go too crazy. I make a sign, some tissue paper pom poms and then hung some coloured streamers. Oh, and I also made confetti by hand hole punching coloured paper with a single whole punch, you know, because I am crazy.

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I also had to go out and buy a silver 1 balloon because, well, I had to.

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Uno was the theme of course.

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I baked a couple of things, including cupcakes and cookies. I also made all the appetizers from scratch because I like to make my life difficult. I love doing it but it sure was exhausting. Thankful I did get some people to bring food as well so I wasn’t totally going crazy with prep work.

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My Aunt made Matteo’s awesome cake!

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With it being his first time opening presents, Matteo wasn’t quite sure what to do. Oh, and of course we had to have football on in the background for all the men.

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Matteo was mesmerized by the candle.

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And thought the cake was pretty delicious too.

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After a quick costume change him and Papa decided to make the same face.

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Then he went off to play with his new toys.

The party was great with so many family and friends showering Matteo with gifts and love. However, I did find it a bit overwhelming! I don’t know if we have ever had that many people over to our house before. There was barely any room to move! I think next year I need to split it up and do friends on one day and family on another. That might be a bit more manageable.

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NOM NOM NOM!

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The following day was Matteo’s actual birthday. He ate some party hats, ate some cake and played with all his toys. He was a happy boy.